Day 54....

Monday, November 12, 2012

I just realized that on the last post I was in my usual time warp...it was a snowy Saturday not Sunday.

Dillon is getting better each day.  His nausea is at a more controlled level....certainly not gone but it is not consuming his full attention and energy every moment of the day.  He did eat a few bites of watermelon yesterday, which he vomited about an hour later and then 2 more times after that....I guess the old belly decided it wanted to be VERY empty yet again.  He tries so hard to meet the expectations of eating and often it is stressful for him.  This is yet another Catch 22 situation. He gets angry with me when I ask him throughout the day if he wants something to eat.  I have a small arsenal of his favorite foods to draw on at any moment.....to no avail.  I conveyed the story to him about his birth and how from the very first breath he took my main job in this world was to feed him.  He listened, rolled his eyes, declared that he does his best.  "Yes my strong one....you do your very best, better than anyone would ever expect.....but as your mommy I just cannot stop trying to feed you."  I wonder if I should just stop trying, or asking, so that his perception of pressure from me is removed and thus his stress level around the food issue reduced.  Surely a growing adolescent boy will eventually regain the intense desire to eat....constantly....right????

We had another fantastic night of sleep last night.

The doctors think that the steroids are beginning to work on the gut GVH.  He began the one that he has to take by mouth today.  Of course.....the side effects.....Good Lord do we always have to trade one solution for another outcropping of symptoms?   This time it is VERY high blood pressure.  High enough that they are having to treat it.  So they take his blood pressure about a million times every day and when he has 3 highs in a row then in comes.....you guessed it.....ANOTHER MED.  This is a strong antihypertensive that he puts under his tongue, tastes bad enough to induce immediate vomiting, and works on the blood pressure in just minutes.  Holy moly does this cycle ever cease?

Sean's folks are arriving today for their first visit and Dillon is looking forward to that.  The depth of this boy's support network continues to grow.